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CHAPEL HILL, N.C. (WNCN) – For the first year of her life, a hospital room was the only home Isla Johnson had ever known.
Each day, Leah and Eric Johnson drove nearly an hour from their house in Liberty to UNC Hospital in Chapel Hill to spend time with their baby, and each time they left, they dreamed of the day they’d take Isla home with them.
“It’s really been a roller coaster,” Leah said.
The Johnsons knew their first child might be premature.
“I struggled with pre-eclampsia early on in my pregnancy,” Leah explained. “We knew she would probably be early, so we were prepped for all of the things that come with a premature baby.”
But they didn’t know just how early Isla would arrive or how sick she would be. She was born nearly three months early and weighed a little more than a pound and a half.
“Her lungs were not developed, but we had no idea she would have anything else going on,” Leah said. “It was a couple weeks, and then we realized her lung, just one of her lungs, was hyperinflated.”
Isla was born with a rare lung condition called congenital lobar emphysema. She needed specialized care and was transferred from the Greensboro hospital, where she was born, to UNC Hospital. Isla was not quite two months old and only weighed three pounds when she had surgery to remove part of her lung.
She struggled after surgery.
“You would think after that was out of the way, we were kind of out of the woods, and that was how we felt, but that’s not really what happened because her lungs were so premature,” Leah said. “She now has BPD, bronchopulmonary dysplasia.”
As Isla faced one battle after another, her parents leaned on their medical team.
“It’s scary, but it’s really helpful to be here in this setting with all the nurses around you at all times explaining things to you; it kind of helps you through it,” Leah noted.
As much time as the Johnsons spent at the NICU, it almost started to feel like home. Still, everyone wanted to see Isla released from the hospital. They initially had a goal of getting her home for her first birthday, but knew that might not happen.
“She has her own timeline,” Leah said. ” Whatever you think she’s going to do, she’ll probably do the opposite.”
“She’s on ‘Isla time,’” Eric added, smiling.
As her first birthday approached, “Isla time” turned out to be perfect timing. As her parents planned her homecoming, her nurses planned a birthday party to celebrate the little girl who’d been in their care for nearly a year.
“They’ve been great; they’ve been really good,” Leah said of the nurses. “They’ve helped us through the past year. It’s been pretty difficult.”
Eric and Leah both say the UNC staff has become a second family, and it isn’t easy to say goodbye.
“It’s bittersweet,” Leah said, wiping away tears.
On Isla’s first birthday, nurses and hospital staff lined the halls as the Johnsons walked Isla out of the NICU. There were hugs, tears, and well-wishes for a family they’d stood by through terrifying times and joyful ones. Isla slept through all of it, but it’s a birthday her mom and dad will never forget.
Eric and Leah Johnson drove away from the hospital, just like they have every day for a year, but this time was different. Isla finally got to join them, and they all headed home as a family of three.
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Maggie Newland
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